#infantilespasms

[rivercove04]

He’s finally gaining weight! His thighs are filling in so a lot less “chicken leggy” and his shirts are starting to fit snugger. We still deal with throwing up about once a day or every other day but hopefully we can get that eventually under control. He is just one sensitive kid when it comes to tube feeds. I am just in awe of how long we have gone without a seizure. I keep holding my breath,watching every twitch, knowing any day our lives could change again..but we went from this grim outlook,uncontrollable seizures,debilitating diagnosis,and a zombie of a child..to this little boy who has life in his eyes and a more hopeful/brighter future. He at one point had 4 different seizure medications on board to now only 2 and one of them only used at night..and hopefully going to try weaning that one this fall. I am so very thankful to God for this mountain top moment for my little man. He is such a fighter!! #cerebralpalsy #epilepsy #epilepsyawareness #cpawareness #meningitis #infantilespasms #westsyndrome #tubie #soproud #specialneedslife #specialneedsmom #josiahsjourney

[freddieos-mum]

In the last month or so Freddie Cheese has discovered his index finger on his right hand (lazy lefty is always much further behind on milestones) and it’s amazing, not only does he was to point at everything when you’re reading a book but he also has the strength to press buttons on his toys. Along with his strengthened index finger has come the ability to pick items up with his pincer (mainly food) and his pinch has reached a new level of pain. For a child whose fine motor skills have always been extremely poor this is huge, literally huge! It means the way he plays has changed and he understands the power of the point (when they point and you have to say what it is their pointing at). I’m currently enjoying watch him repeatedly press Beat-Bos buttons then pointing to his eyes/tummy in turn and looking for me to say the word. This child continues to amaze me daily. Not only have his fine motor skills improved but he’s also making progress with sounds and communication. Freddie can now produce the ‘T’ sound, often just saying ‘tttttttttt’ to himself. He can say Mama and Dada and he knows who we are, he’s called out ‘mama’ a couple of times when he’s wanted me. There’s a few other sounds he can make but, in more general terms, he tries to repeat sounds we make when we talk to to him. He also understands ‘cuddle’ if I ask him if he’d like a cuddle or I say ‘mama cuddle’ he will roll over to me and hold his arms up if he’d like a cuddle, if he’s sitting on my lap he’ll throw his arms around my neck and nuzzle in, or he’ll make it perfectly clear he doesn’t want one. We think he understands quite a lot of words. Ultimately it’s about repetition and making things simple for him, which we do. We also use a handful of makaton signs which he is starting to get (extra thanks to Mr Tumble) and he can sign ‘friends’, he’s also got much better at waving/clapping. He’s started moving his hands more and we think he’s trying yo use more signs but we’re not sure what they are yet. Basically, Master Cheese is coming on leaps and bounds! It’s genuinely incredible to witness but I can’t help but have a lump in my throat about what might be around the corner. I guess that will always be the way though, it certainly doesn’t take away from our enjoyment of now.

[localcabledeals-blog]

Today has been a day filled with sadness. @mig.cervantes & @kellygc411's daughter, Adelaide, who battled epilepsy and Infantile Spasms, has left us all in tears. May she rest in peace. Our hearts are crying and lips sealed for we have no words to express the pain after this news. #AdelaideNews #Adelaide #ObituaryOfTheDay #epilepsy #epilepsyawareness #infantilespasms #sad #epilepsywarrior (at United States) https://www.instagram.com/p/B3mXxo9gKZB/?igshid=nxy55dxmswj3

[mysonshiva]

Up, above the rods so high

Shiva has been climbing up on anything with rods or handles. It is not a new development, but the agility and confidence have risen. It is a gradual, but systematic process for him. He will set foot at the lowest step and then using his arms, he slowly, and calculating, climb up. This new home has a door made of iron rod columns for the balcony. From the living room, he has direct access to these doors, especially with the curtains drawn open. 

This is where he has been practicing for the past couple of months, and today he took his practice a step outdoors, on the monkey bars in the play area. And how he climbed! He was thrilled. as dextrously and carefully as he can, he slowly and steadily went high until he looked like he was on top of the world. 

A good day, today. Overlooking the little incident at the sand pit where he tested the soil by pushing a fistful into his mouth. He enjoyed the texture, especially all the gritting stone between his tiny teeth. But, he was told very firmly to not do this again as I rushed to flush out the sand from his mouth at a nearby tap. 

Baby steps, and we don’t mind it. 

But, coming to that though. He is no baby any longer - this little monkey is turning five in less than three months! FIVE! Goodness. 

[a2zmedicalnote]

The term Infantile spasms syndrome defines an epileptic syndrome occurring in children younger than 1 year (rarely older than 2 years), with clinical spasms usually occurring in clusters whose most characteristic EEG finding is hypsarrhythmia [the spasms are often associated with developmental arrest or regression].

[blackmuslimgirlfly]

💜 Go Follow @BlackMuslimGirlFly 🌟 #Repost @blackmuslimgirlfly: ・・・ Our #FridayFeature this week is a modern day super hero.💙 Read our in-depth #BlackMuslimGirlFly interview with a phenomenal mother and #author of children’s books & #MuslimUrbanFiction like no other, @AuthorUmmJuwayriyah! https://bmgfly.com/portfolio/umm-juwayriyah/ (Link in bio) . .⠀⠀⠀⠀⠀⠀⠀⠀ .⠀⠀⠀⠀⠀⠀⠀⠀⠀ #blackmuslimgirlfly #authorized #FridayFeature #muslimwomenrock #blackwomen #blackgirl #Sisterhood #BeingBlackAndMuslim #Educator #Author #citeblackwomen #celebrateblackwomen #CiteBlackMuslimWomen #Kuwait #MiddleEast #melanin #blackgirlmagic #Repost @authorummjuwayriyah: This is a picture of my daughter Hind and me! Hind just turned 12, mashallah! She was my first all natural - no meds labor and delivery! I delivered her in 4 hours. She nursed easily. She was beautiful and perfect. Then she changed. I didn't know what was happening to my sweet baby. She was diagnosed with a rare form of epilepsy (#infantilespasms) when she was 8 months old. Later at 3 she was further diagnosed with Pervasive Developmental Delays. #Autism. Those were the darkest and hardest days of my entire life. Not knowing what to expect or how to even help my baby was a nightmare I fought hard to escape with the mercy of Allah. Every day is still a struggle. Every day is new. Every day I pray for her. Every day I put my trust in the Most High to pull us through. I am thankful that we are not where we use to be. I was told so many no's. I didn't get much help from the doctors! I am grateful for the knowledge I have gained. The patience and contentment with His decree for me and my child - is sobbering. I am humbled that I get to share this journey with others and help them through, too! In 2012, Hind's Hands- A Story About Autism was written by my older daughter Juwayriyah and me about my daughter Hind to help spread awareness in the American Muslim community about childhood Autism. April is Autism Awareness month. One body, one ummah helping each other. -Umm Juwayriyah, M.A. #epilepsyawareness #MuslimGirlsRead #Weneeddiversebooks (at Kuwait)

[ohsweetjoy]

Good news! Heading home now and Isaac's brain activity looks fine from what the neurologist looked at today. She still needs to read the test fully but it just seems that the irregularities are just due to Isaac having Down Syndrome. Now continue to research what we can do for him to improve his brain and cellular function. #t21 #isaacazariah #nicugrad #randallchildrenshospital #eeg #infantilespasms #babyboy #seizures

[blackalecat]

Twin #kenogenic #vegan lunch! They tend to get jealous/ curious of one another's food so I try to make them as similar as possible. Both plates ended up on the floor but thankfully most of the food ended in their bellies. They also enjoyed a #homemade ice cream. #iswarrior #infantilespasms #18monthold #13monthsold #cousins #lunch #lunchtime #veganeats #veganbabyledweaning #babyledweaning #tofuscramble #coconutyogurt

[thecaregiverspace]

We've had a rough time since yesterday. His little face is already puffy from the steroid. He's still having cluster seizures very frequently and is very fussy. He's hungry all the time but has diarrhea and vomiting from the steroid. He's on Zantac to protect his stomach but that only goes so far. We're allowed to give him Pedialyte to prevent dehydration. Hopefully the steroid will start working soon, otherwise, we will begin an anticonvulsant medicine. Who knows what kind of side effects that will have. We see his pediatrician tomorrow for bloodwork. Please pray that the seizures stop soon and we get the answers we need. That's all we can do. #ollieISstrong #olliejollybear #infantilespasms #epilepsy #facesofcare #littleseizuresbigconsequences #littleseizures #epilepsyawareness 📷: @ollieisstrong http://ift.tt/2ry4LH1

[rivercove04]

Many of you have been on my journey of tragedy where in 2015 my son became ill resulting in extensive brain damage..then a rare form of epilepsy attacked him which we battled for years. It was awful. To have to give steriod injections daily into your child, fill his body with seizure medications, watching him slowly disappear due to Medical induced sleep. I knew ultimately we had to do whatever we could to stop the seizures to protect his brain from any further damage, but this mommas heart shattered. Then a year later I lost his father, my late husband, to a long battled of mental illness. Then after a divorce. None of this I asked for and those years were so incredibly hard. Emotionally,physically,financially. I had to share to say dont give up no matter what. Keep getting up. Keep moving. These hardships made me stronger. Made me who I am today. If it wasnt for those journeys, I wouldnt be where I am today. Josiah lead me to becomes a foster parent, then a special needs medical foster parent, to becoming Amirs mother. To giving even more children a home who would have not had a hard time due to their medical needs. It also brought me the most incredible husband who trained while we were dating to become trach vent so he could help care for our son. Who we now also care for our foster daughter. He devotes endless hours of the day sitting in hospitals if one of the kids get sick or takes time to play with them. He is such a blessing to our family. He is my best friend. We still have our hardships and struggles, after all we live in a broken world. Just have faith in everything that whatever you have been through or are going through, it WILL get better. It WILL make you stronger. Just have faith ♥️ Thankful for all of you who have continued to support maddiesmadhatters.com to help us to continue to be home and care for these children in their time of need. #medicalparents #medicalfosterparents #therapeuticfostercare #fostercare #specialneeds #specialneedsparents #specialneedsfamily #strength #nevergiveup #faith #youwillbegladyoudid #youvegothis #trachbaby #trachlife #digeorge #cerebralpalsywarrior #cerebralpalsy #cerebralpalsystrong #infantilespasms #epilepsymom https://www.instagram.com/p/CIdLpAYFQK4/?igshid=wajjp4ti95gw

[freddieos-mum]

2017...

was another year of knowing mitochondrial disease exists, another year watching it fight against our boy, feeling the heartache and loneliness that comes with it. Before this disease came into our lives, I guess, New Year was a time of hope, positivity and fresh starts. I can’t enter a new year with the same hope or optimism anymore. Of course there are moments of hope but I can’t look at a 12 month calendar and have hope or ambition for that length of time. Is that something that happens with age anyway? Or is it just the disease which has changed me? I know that those 12 months will be filled with as many highs as lows, they’ll be lots of laughs as well as tears. I just have one ask 2018, please, this time next year let Freddie Cheese still with us, please allow us to celebrate another Mothers Day, Fathers Day, birthdays and Christmas as a family. I promise I won’t waste any opportunities and we will live life to the fullest if you’ll let us.

2017, I will take from you our memories; we went to Brighton, Cologne, Paris, Centre Parcs, I completed Tough Mudder and two 10k runs to raise awareness for The Lily Foundation, as well as a radio interview about mito donor IVF and a newspaper interview about Freddie to support Jeans for Genes, Freddie had a gastrostomy fitted but he grew stronger, started eating and chewing better than ever, he discovered his index finger which means his pincer (and pinch) have improved ten fold, he can manoeuvre himself with purpose and empty the DVDs under the TV, he’s not had a seizure for eleven months (although I won’t hold my breath), he spent less time in hospital than 2016, we’ve taken him bowling, he’s been in a trailer on a bike, he says ‘dada’ and ‘mama’, he can sign ‘friends’ and he’s completed a term at nursery only having one session off because of illness, he’s been to numerous local shows, seen a musical and been to an art gallery in London, and he can sit unaided for his longest time ever (but not indefinitely). Most of all, we have laughed, we have laughed a lot. I actually think we have laughed harder than we’ve cried this year. That is an achievement in itself.

Tonight, I will take a moment to think of all the warriors (and their families) who lost their fights this year. Little heroes every single one.

Enjoy your celebrations everyone, after my curry I am off to bed... and I’m sure I will watch the monitor closely and enjoy listening to the sound of Freddie’s breathing for a little while before I fall asleep.

[sunovion-epilepsy]

#MyEpilepsyHero is our daughter, Gabby, who shows us every day how to live an incredible life with #infantilespasms #epilepsy Read her story here: https://t.co/WI9v9JvIjS http://pic.twitter.com/CSRUdTMVL5

— Chris Seay (@ChrisSeay104) December 13, 2017

[sqwehrman]

Last Charlie post for #ISAW2016 here on sqwehrman, because we want to end with HOPE. When Charlie was diagnosed, we didn’t know what his future would hold.  All we wanted was for him not to regress, so our blog sort of became a tracking instrument for us to make sure we had indicators of progress or decline to look back on.  Luckily for Charlie, his seemingly infinite energy and innate drive have pushed him past plateaus and challenges; he is always moving forward.

In 2015, Charlie’s speech was rated at <5% intelligibility for an unfamiliar listener (after IS and then focal seizures, our next big battle became childhood apraxia of speech).  He mostly had vowel sounds, and only a few consonants - and those consonants were exclusively at the end of words (”at” could mean bat, cat, hat, etc.).  

As of this summer, Charlie has an 80%+ intelligibility score.  Where we used to not understand him because he couldn’t get the words to form, now sometimes we don’t understand him because he’s talking about stuff that’s over our heads!  In the last year, Charlie has learned all of the planets, dwarf planets, many constellations, all 50 states and capitals, every orchestral and many other world instruments, some dinosaurs, all of the oceans and the Great Lakes, and now... continents, countries, their flags, and their capitals.  

Charlie has beaten some long odds to get to this point.  He has worked so, so hard. Even if some things don’t come naturally to him, learning definitely does, and we are so excited to see the path he charts next.  (If it’s up to him, it’ll be around the globe.) 

[ohsweetjoy]

Overnight EEG! #sleepybaby #t21 #nicugrad #citylights #pdx #infantilespasms (at Randall Children's Hospital at Legacy Emanuel)

[blackalecat]

3 little babies. 👶🏽👶🏾👶🏽 #35weekspregnant #13monthsold #17monthsold #cousins #boymama #rainbowbaby #babyblastoise #aydenfern #veggiebaby #veganbaby #infantilespasms #iswarrior #warriorbabies #momlife #auntielife #sahm #babiesofinstagram

[hope4nathaniel-blog]

Hoping for the Impossible

During almost every conversation I have with our neurologist about Nathaniel's seizure treatment she will say to me "because Nathaniel's seizures are extremely difficult to control, we aren't ever expecting him to be seizure free. We just trying to control his seizures as much as possible." Because I'm so used to hearing this from our neuro and because seizures have become such a normal part of our lives, I have pretty much stopped imagining what life might be like for Nathaniel if he were to ever be seizure free. I've come to accept that the doctors think that Nathaniel will never be seizure free, even with medication. But sometimes in the late hours of the night when I'm alone with my thoughts, I let my heart hope for the impossible. That's exactly what happened last night at around 3:30 a.m.. I was leaning on the hospital bed rubbing Nathaniel's back, listening to the beep of monitors while he transitioned back and forth between sleep and crying. In my exhaustion, I felt the spark of hope. The first small hope I had was "what if the Keto diet actually works?" Next came "What if, for once, he's one of the small percentage of kids that this treatment actually causes to be completely seizure free? How would that improve his development? Might he actually be crawling by Christmas? How would it improve his fine motor skills? Could he more easily learn to feed himself? What would his personality be like if he's not constantly interrupted by seizures all day? How would his vision improve?" Imagining Nathaniel seizure free with improved development was beautiful. Dreaming some new dreams for his future encouraged me, even just for a little while. It's hard to hope for the impossible, especially when all the experts keep telling you that it can't be done. Even though I know that nothing is impossible for God and that miracles happen every day, I also know that miracles don't happen to everyone. But for today, I'm going to choose hope. I'm going to believe that this treatment is going to work. I'm going to have faith. I decided to focus on this verse over the next couple of weeks as we go through the steps for brain surgery and as we continue with Keto: "I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit." - Romans 15:13 I don't always have the strength to keep hope, but I MUST keep fighting and hoping for Nathaniel. So instead of giving up (like I often feel like doing) I'm going to look to my true source of hope and I'm going to pray to be filled with peace and joy. I'm going to keeping fighting for our fighter.